Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

Monday, September 1, 2014

Ice Bucket Challenge is for ALS

Recently there has been an amazing viral challenge all over
Facebook and the Internet.Millions have
been raised for ALS (amyotrophic lateral sclerosis) with
the ALS Challenge and many have been educated about this devastating disease
that has no known cure, no known prevention and very little research.It is also a rare disease, just as congenital
diaphragmatic hernia.Though more are
affected by CDH than ALS – we commend them as a rare disease organization for
this campaign and hope it not only brings more funding now but in the future
too!We also hope many will step forward
and volunteer their time or services too! We also hope answers are found in research!

Though the ALS Foundation has also had some microscope their
financials – we would encourage you to look at the fact that only 7% of their
funding ending in January 2014 was for Administration costs.The goal most nonprofits should make is 25% or
less for Administrative costs.This
means that 93% of their revenue went to their programs to help education,
support and for medical research.That
is awesome!

This said, Breath of Hope would encourage anyone who does
the “Ice Bucket Challenge” to donate to the ASL Foundation.This is not our campaign and we refuse to
ride on the coattails of another charity while their campaign is in full
swing.That is infringement.It is just not ethical in any way, shape or
form.We have worked hard with our
original ideas too and understand how it is to be the charity with this
original campaign – that went viral – and others infringe upon it and create
new days or new twists to benefit their charity.Again, it is unethical.We have never done this and refuse to
infringe on others doing so borderlines corporate fraud.(We know that is a strong accusation but if
you can’t come up with your own campaigns and piggy back off of others, that is
exactly what it is!)

We are working on a campaign for March which will also
involve social media – stay tuned!It
will have a different twist – an ORIGINAL twist and we hope to raise awareness
of CDH the way the ALS Foundation has raised awareness for ALS!